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racinie
07-03-2007, 12:49 AM
So, I'm about to be on 2000mg of cellcept. My doctors and I are hoping that this stuff knockes out any kidney involvement I have. i'm RREEAALLLLLLLLLYYYYYY hoping it does, because the next step would be high dose prednisone and/or cytoxan. I'm an out-of-state college student so that kind of treatment would be really hard on me. Anyway, I was wondering if any of you have had good results with cellcept? Because i could really use some encouragement... I was reading another thread about a different drug and a bunch of people were saying that the cellcept didn't really work for them. That bums me out.

Saysusie
07-03-2007, 09:57 AM
Cellcept does have side effects and not everyone is able to tolerate the drug. However, the successes with Cellcept outnumber the failures (especially for treating Lupus Nephritis and preventing it from turning into chronic kidney failure). Cellcept has been found to have less toxic side effects than either azathioprine or cyclophosphamide.
I do hope that it works for you. Keep us posted on how you are doing with the drug!

Peace and Blessings
Saysusie

racinie
07-03-2007, 05:06 PM
well, i've been on it for 4 weeks now and the side effects haven't been bad at all. a little nausea at first but it's gone now. I'm getting labs done in a few days to see if anything's getting better. hopefully!

Missy
07-07-2007, 10:00 PM
HI!

I had Lupus Nephritis stage 4 and used Cellcept in combo with Lisinopril for high bp to get me back to where I am now, which is completely off Cellcept with normal labs and on only 1/2 the amount of Lisinopril I was on.

You were looking for a happy ending story with Cellcept and I'm it! I was on Cellcept for 2 years at the 2000 mg dose and took 1 year to taper to 0 (if I'm remembering correctly). The only side effect I could attribute to Cellcept is something I call "medicine tummy" where I would feel nauseous unexpectedly, mostly when I hadn't eaten enough. I did end up taking my Cellcept with food, although at the beginning, I did the recommended approach of taking the Cellcept before or after meals for maximum absorption.

I hope this helps and let me know if you have any more questions about Cellcept or Lupus Nephritis! I wish you the best of luck!

vetgirl
07-12-2007, 07:43 PM
Hi, I've been on Cellcept for about 2 yrs now, but not for my kidneys, which seems to be the most common use. I was started on cellcept because my doctors said that I had something called shrinking lung syndrome, where my lung's weren't inflating fully because my diaphragm was not functioning well. I had shortness of breath and pain on deep inhalation. Well, the cellcept seemed to improve that. Then about a year ago I had a seizure and we found a couple of brain lesions. Doctors think the lesions are probably from lupus, but we still don't know for sure what is happening up there. The lesions haven't changed and haven't had any more real obvious symptoms, just some brain fog and fatigue I guess.

Well, the point is since cellcept the shrinking lung has improved. With the brain lesions they brought me up to 3000mg a day of the Cellcept to see if it would help. Well, I don't know how much it helped, but it sure hasn't hurt. I seem to be gradually feeling better and no new lesions. I haven't noticed any side effects that I can attribute to Cellcept. I have some mild nausea, occasional diarrhea, and inappetance, but it isn't any worse than before I started treatment for lupus.

Well good luck, I hope Cellcept will do the trick for you.

mrssjlee
08-14-2007, 10:59 PM
I had stage 4 kidney disease and was put on 6 months of cytoxan. I was already taking prednisone and plaquenil at the time. After cytoxan I was put on cellcept and responded very well to it. With the help of cellcept, my kidney disease is gone, i have no more protein in my urine and my rheumatologist was able to lower my prednisone (something she could never do previously without causing a major flare up) and now I have been completely off of prednisone for almost 2 months. I have been doing really well and a month ago my nephrologist took me off of cellcept completely as well.

This is the healthiest I have been in the past 15 years and I think it's b/c of the cellcept. :D

misslisa1017
09-13-2007, 02:44 PM
Hi everyone

I just started cellcept yesterday. My rheumy started me on it because I've been so sick. My lungs and heart are involved in whatever it is that is attacking my body. I can't take it anymore.

I get severe pain my the chest area that spreads into my lungs , rib cage and up into my throat, this last time, I even had pain swallowing. It's so hard to tell if it's fluid around my heart or fluid around the lungs causing all the pain. I am so sick of it.

I'm on cellcept, plaquenil and prednisone. The prednisone is the only thing that drops the pain level for me to be able to function.

So this is what my rheumy is using the cellcept on me for. Lung and heart involvement. Right now I'm dx'd with having UCTD.

Keeping fingers crossed that this disease will go into another remission for me. It did for almost 2 years. And we think the plaquenil was the reason.

Keeping my fingers crossed here.

Lisa [/b]

Saysusie
09-13-2007, 09:17 PM
keeping our fingers crossed with you!!

Peace and Blessings
Saysusie

browneyedgirl53
09-18-2007, 10:47 AM
Hi Racine and Mislisa,

I have full blown lupus with brain, kidney, heart, lung, skin involvement. I have been on 4,000 mg of Cellcept for almost two years now. I have to say that the Cellcept has certainly helped with many of the symptoms, however......in my case; I had experienced bouts of dizziness, CNS problames, tremendous weight gain (all of these are noted side effects).

I've done a lot of reading and research on Cellcept and of all the medical treatments used for lupus; it seems to be the safest medicine with the least amount of side effects (but it does leave your system vulnerable to diseases).

With that said, I would recommend having a nice long chat with your doctor about options and time-span for being on this medication. I used to always think of more questions AFTER I had been in the doctor's office (silly me). One of the side effects that bothered me the most was of cognitive dysfunction.

I wish you the best of luck with your treatment, stay connected with your doctor and NEVER BE AFRAID TO CALL AND ASK QUESTIONS OR IF YOU NEED FURTHER EXPLANATIONS! It's your body; it's your life.

Take good care of yourself and please keep us posted.

Much love,
Browneyedgirl

buddhabelly
09-18-2007, 03:29 PM
I am also taking CellCept (2000MG/day) and Lisinopril (2.5 MG) for my kidney nephritis. I was taking 3000MG/day, but after my last lab report, my protein and creatine levels have improved. My nephrologist then tapered me down to 2000MG/day. I visited my doctor today and had more tests done. He said to wait for his call about the blood/urine results, and if the tests show improvement, he will taper me down to 1000MG/day. So, I have shown improvement with the CellCept. I've been on it for about a year now. I really don't notice any side effects except for maybe being a little tired. Other than that, I feel fine. :) Hope my story gives you some encouragement. :wink:

misslisa1017
09-26-2007, 10:11 AM
Well, I've been on the cellcept now a little over two weeks. I feel like I'm in a fog sometimes from it, and get sick to my stomach. Also light headed/dizzy at times. Not sure if this is a side effect, but I will be talking to my rheumy tomorrow because I have an appointment with her.

Another thing I've noticed is a little more swelling in my lower extremities, and less output of urine. I'm thinking this might now be good...and a lot of headaches.

Well, that's my complaint for the day LOL

Later peoples

Lisa

Missy
10-18-2007, 07:35 PM
Good luck, Lisa -

I hope your body responds well to the Cellcept. I had some of those side effects, too.